Derbyshire parents support hospice Christmas Appeal in memory of son
No parent ever imagines they will have to say goodbye to their child, let alone plan their funeral with them.
For Greg and Karen, of Ellastone, that unthinkable moment became reality when their son Freddie was diagnosed with brain cancer just before his 10th birthday in 2022.
“We knew he was dying, he knew he was dying. He had terminal cancer and we talked quite a lot with Freddie about what he wanted for end-of-life,” said Greg. “In those last months of his life, everything was geared around keeping him at home and choosing the right path.”
Like other 12-year-olds, Freddie loved going to school and being with his friends. Unlike most other 12-year-olds, he was also planning intricate details of his funeral. Before he died, when faced with the unthinkable, that no child and their family should have to face, Freddie detailed exactly what his choices were. Although a difficult and painful process, this allowed him to have some control of his death and gave comfort to his parents as they could follow his wishes completely.
Freddie’s choice was simple: he wanted to die at home with those he loved the most, his parents, his sister, Bessie, and cat, Nutmeg. He wanted to stay at home after death, so he was never left alone.
Freddie’s wishes were made possible because of Rainbows Hospice for Children and Young People. Rainbows’ dedicated and specialised Hospice at Home team brought calm and comfort while giving practical care.
Greg and Karen are now supporting Rainbows’ Christmas Appeal to help raise the £8.5million it needs each year to fund specialist care at the hospice in Loughborough, in hospitals across the East Midlands or at home
“We promised Freddie he could stay at home for those final days, it was so important to him,” said Karen. “With Rainbows’ help, we made that a reality. We can’t put into words how much that meant to us.”
Before he died, Freddie detailed exactly what his choices were, which although painful, was important for his parents. He was just a child but knew exactly what he wanted when faced with the unthinkable.
From an early age, Freddie was passionate about food. He chose wood fired pizzas and trifle at his funeral and made spoons for guests with the words ‘when you stir this dish think of me’. He created a recipe book for Bessie, so she can carry on his good work.
Freddie chose his burial plot, even sketching his headstone with a pasta bow on it. He chose his outfit and which of his precious belongings would lie beside him.
“We knew what he wanted as he wrote it all down,” said Karen. “He wasn’t scared but he was frustrated, especially when his hands didn’t work as well when cooking.”
On an autumn night last November, Freddie died at 11.50pm. Just hours later, Rainbows had everything set up to enable Freddie’s wishes to be honoured.
Rainbows’ nurses made it possible for Freddie to stay at home, surrounded by love. They provided a ‘Cool Blanket’ and visited daily.
“The nurses were so gentle and respectful of Freddie, chatting to him and making sure he was comfy,” said Greg. “They also took the lead with Bessie, using fingerprints, hand casts, foot and hand rubbings and locks of hair to create priceless memories.
“Without Rainbows, we simply wouldn’t have been able to have Freddie at home,” said Greg. “The nurses did so much for us, including just being there. You can never underestimate how important that was for us.
“It would have been very traumatic to have had Freddie suddenly leave the house. Having him there up to his funeral was a very positive experience allowing us to transition from Freddie being alive, to him being dead. We were with him all that time and for that, we will be forever grateful to Rainbows and everyone who makes Rainbows possible.”
This Christmas, many families across Derbyshire will face the inconceivable. With only 13% of our funding coming from the government, Rainbows must raise £8.5 million every year to be there for families like Freddie’s.
“We had a lot of positive comments from people saying they didn’t know it could be done, the way Rainbows helped us to do it,” said Greg. “Rainbows enabled us to carry out Freddie’s wishes. This helped us enormously during an unthinkable process. Fred was gentle, kind and a loyal friend. We hope people might take a little piece of Freddie’s enthusiasm and joy for living into their own lives.”
To support Rainbows’ Christmas Appeal, visit rainbows.co.uk/christmasappeal